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Bittersweet Sixteen: Part One

Many parents with severely disabled children live life underground. Apart from societyâ€™s burbling mainstreams, they labor beneath the weight of exigent circumstances, dealing with mortal crises day by day. They monitor their childâ€™s breathing, their sleeping, their every bodily function, often for years, developing a sense for delicate balances in their particular domestic environments. Grief has become part of these parentsâ€™ body chemistries. So has perseverance. When they get sleep, they dream of their children walking, talking, playing, the full light of uninhibited life shining in their eyes. Or they have nightmares where jeering people accuse them of not doing enough. Many of these parents have witnessed miracles, including their childrenâ€™s courage and strength in the face of terrible odds or, in some cases, in the face of the mishandling and abandonment theyâ€™ve suffered from the medical and the insurance industries, neither of which knows enough but acts with authority anyway, sometimes making detrimental or even fatal decisions that they write off because they can. These parents have remarkable stories nobody wants to hear. Theyâ€™re too much, they donâ€™t all come out well, they arouse our deepest fears, wear thin our charitable impulses. Like ghost stories, they take the tellers and the hearers to the edges of who they are: Theyâ€™re haunting because theyâ€™re true, yet theyâ€™re unbelievable.

Sixteen years ago, on April 22, my daughter Mattea was born. Back then, my husband and I had no idea sheâ€™d suffered a severe brain injury in utero, nor did I know it was Earth Day. All I knew was that Iâ€™d given birth to a baby girl. Afterward, the midwife wished me happy Earth Day. I barely heard her. I was awash in the thrill of having giving birth to a daughter. Wow, a daughter! Earth day? Whatâ€™s that?

As many of you know from previous posts, we discovered later that large portions of her brain had been destroyed by a predatory organism called cytomegalovirus. These past sixteen years, days and nights spent caring for and trying to help Mattea, as well as a son born before her and another daughter born after her, have been intensely, maddeningly revelatory. For those who might be interested or who have lived similar stories, in honor of Matteaâ€™s Sweet Sixteen Earth Day Birthday, Iâ€™d like to try to tell more of her involved tale. Itâ€™s a hard story and probably a frightening one. And I wonâ€™t be able to tell it whole. But if you are interested and stick with it, I promise Iâ€™ll come to a point that youâ€™ll be able to make something of.

First, about the germ: Cytomegalovirus (CMV) is a common virus of the herpes family. Chances are fair to good that sometime during your life youâ€™ll get a CMV infection, since between 50 and 80 percent of the population in the U.S. contracts it by the time they reach their early 40s. Usually, children who contract CMV pick it up during early childhood, especially, as one site puts it, children â€œin child-care and preschool settings.â€ This would include church nursery. Often, infected children and adults show no or only mild symptoms. The Center for Disease Control reports that CMVâ€™s symptoms, when they manifest, mimic mononucleosis. In otherwise healthy children and adults, the disease presents no special problems.

But if a woman suffers a first time infection during pregnancy, CMV may cross the placenta and infect her unborn child, whose developing immune system is inadequate to repel the attack. The earlier in the pregnancy CMV attacks a fetus, the more severely it can disable the child. Later term fetuses have more mature immune systems. Usually, they suffer less severe effects, though the effects they do experience â€“ varying degrees of deafness or blindness â€“ can be challenging enough. The CDC reports that 1 to 4 percent of uninfected mothers get their first CMV infection during a pregnancy. Repeating the mantra of most CMV information out there, the CDC says, â€œPregnant women can catch CMV through contact with children in day care, especially from children who are one and a half to two years of age.â€

All the usual bodily fluid suspects, including breast milk, transmit the disease. Toys that infected children handle can spread CMV to uninfected children who play with them. Children infected in a childcare environment, such as day care or church nursery, may bring the virus home to their family. So a pregnant day care worker, including a day care worker who doesnâ€™t know sheâ€™s pregnant, is at special risk. So is a pregnant woman who has a child in day care or who might baby sit or play with somebody elseâ€™s child who attends day care. A pregnant woman suffering a first time CMV infection may not know anything is amiss. Her symptoms, if they show, will mimic a mild but persistent cold. Meanwhile, the virus hits her unborn babyâ€™s central nervous system like a hard frost, destroying budding tissue left and right.

According to the CDC, one child an hour is born to a life of permanent disability due to a congenital CMV infection, with the disease disabling around 8000 children each year. Dave, our first and by far our best pediatric physical therapist, said he suspected the number was much higher, believing many more children are born with disabilities resulting from congenital CMV infections than are detected or supposed. As far as protecting your unborn child is concerned, the CDC makes no guarantees: â€œNo action can totally eliminate risks of getting CMV for the first time during a pregnancy.â€ A CMV vaccine is still in R & D.

I hope that by the time my youngest daughter marries, the vaccine will be available for her if she needs it. Until then, knowing that CMV exists, getting tested to determine whether or not she is at risk for contracting a first time CMV infection during pregnancy, and practicing exceptionally good hygiene during pregnancy remain her only ways to protect herself from a CMV infection. All things I wish Iâ€™d known back when.

Those are the basic facts of CMV, cold and hard as stones in a stream. Ask any family who has raised a child who suffered a congenital CMV infection and the story becomes dramatic and extraordinary.

The probable vector of my CMV infection was an ill, eight-month-old child left in my care when I was at the end of my first trimester. My general practice during pregnancy was to reduce my risk of illness of any kind by cutting back on social engagements and by not allowing children who werenâ€™t mine into my home. So at first I refused the request to baby sit the little girl. The person making the request pleaded. â€œIt will be easy, sheâ€™s asleep. See?â€ I gave in. I didnâ€™t know the child was ill and the person who left her didnâ€™t think it important enough to mention. He simply laid the child, still sleeping, on a quilt on my living room floor. She woke an hour later, irritable and fussy. Clearly, she wasnâ€™t well. Sheâ€™d only be comforted if I carried her. Irritated with the trouble but determined to take the best care of her I could, I got out my baby sling and wore her on my hip for about an hour. I wiped her nose; I changed her diaper; she sneezed and coughed. She slept off and on, nestled against my side. Having received no education on CMV, I had no idea such a disease existed. I thought, â€œOh well, she has a cold. The worst that will happen is that I might catch it, too.â€ And I did. I was pleased at the mildness of the symptoms. I remember thinking, â€œThis isnâ€™t too bad.â€

And I forgot about it. A year and a half later, we were fully immersed in the Mattea mystery. I needed advice desperately. I called a friend who had walked through a similar fiery furnace. Her son was born with Fanconi aplastic anemia. Not only had he received a bone marrow transplant at a very early age, but also he struggled with a host of related disabilities and illnesses, including damage to his DNA caused by overdosing with the cytoxan in his chemotherapy drug and hepatitis C contracted through a blood transfusion. Because CMV does endanger children and adults whose immune systems are compromised, such as AIDS sufferers or people taking chemo or immunosuppressive drugs for transplants, as her son had done, she was more up on CMV than I was.

â€œCMVâ€™s tenacious,â€ she said. â€œStudies have shown it survives on surfaces, like changing tables, toilets, and sinks, well past the usual life span of many viruses exposed to air. Itâ€™s especially rampant in day care environments. Thatâ€™s where youâ€™re most likely to pick it up.â€

â€œDay care!â€ I said. â€œBut I donâ€™t do day care and I donâ€™t know anybody in day â€¦â€

Just then, the family whoâ€™d left their baby girl with me when she was sick walked by the window. At two, she was toddling, cute, and healthy. In a flash of shock, I recalled that both her parents worked and that the little girl had been in day care almost since sheâ€™d been born. That very day sheâ€™d been left in my charge, sheâ€™d come straight from day care.

â€œOh, yes I do,â€ I said, watching them pass. â€œI do know someone.â€ And the bolt struck, lighting up corners of my life I hadn’t given much thought to before. I saw the opulence of my ignorance, light splashing off its absurdly large jewels and foolish golden cups. I saw the harrowing intimacy in which Iâ€™d been living with my fellow beings, an intimacy whose depths and power Iâ€™d grooved along ridiculously unaware of. I saw human agency as a dynamic system of animated choices and radiating consequences rather than as a personal-sized pizza topped with individual rights and private desires. In its flight of shock, my mind circled around and around a single, dazzling point. I saw that, regardless of its insubstantiality, common ignorance â€“ what a person doesnâ€™t know â€“ works upon the world in hammer strokes of mortality.

So this was how it worked! You could pay a generous tithing, give 110 percent in your church callings and perform all church and family responsibilities within the best of your abilities. You could abstain from tobacco, coffee, cigarettes, alcohol, illicit drugs (or even most legal drugs), and, going the extra mile just to be sure, avoid Coke, which you hated anyway. You could uphold the law of the land. You could pray, repent earnestly of sins great and small, and set your mind upon the straight and narrow path. You could strive for honesty in your dealings with your fellow men and women, be modest in your thoughts and prudent and faithful in your marriage and otherwise maintain your temple worthiness. You could even love your fellow beings passionately (most of them). You could trust God not to push you beyond your ability to meet the challenge. Still, one charitable act, replete with the best intentions yet lacking some minim of knowledge, could send you and others dependent upon you careening into a hairpin turn, where you see the face of God, so unlike your imaginings, so full of wrinkles, dimples, and blinding gleams it wrecks your paradigm just like a common traffic accident totals a pampered vehicle.

Meanwhile, those who ran you off the road motor on their way, completely unaware and unaffected, their futures smooth and undisturbed by the already forgotten episode.

Thanks for telling more of the story. The really important stories I think always engage really hard things.

Julie M. Smith on April 21, 2008 at 10:51 pm

Patricia, I don’t wish to threadjack because I know your post isn’t really about the mechanics of CMV transmission, but as someone who wants to be pregnant again, I can’t help but be terrified of it now. So I wonder: it seems that the easiest thing to do here would be to infect adult women with it when they were *not* pregnant. Is that ever done?

Now I’m going to ask some nosy questions that you are free to ignore:

“Just then, the family whoâ€™d left their baby girl with me when she was sick walked by the window.”

Do you think there was divine intervention here or was this a coincidence? (If this happened in a novel, I’d roll my eyes.)

Did you ever talk to the family about it?

“Still, one charitable act, replete with the best intentions yet lacking some minim of knowledge, could send you and others dependent upon you careening into a hairpin turn, where you see the face of God, so unlike your imaginings,”

I’m wondering if you want to expand on your theological reflections here. I know some (very faithful LDS) people think that there is a whole lotta randomness in the world–a lot that just happens that God doesn’t control. On the other hand, when I was 18, my bestfriendslashboyfriendwhobaptizedme died and his college room mate was bemoaning that he hadn’t been able to prevent it and I (new, zealous, black-and-white convert) said that if the doctors had succeeded in saving him, a bus would have hit him when he left the hospital because his time had come. Was I right? Was I wrong?

This is such a wonderful post.
I have two sons with severe hemophilia, and our life is very much different than I expect it would have been without their chronic condition. Their care isn’t as intense as you’re describing, but it is important for all of us to understand that others face trails similar or very different, from our own. Thank you for explaining CMV and it’s transmission.
I’m looking forward to hearing more of your story.

CS Eric on April 22, 2008 at 1:55 am

Stories like yours can be repeated not just by parents of those with crippling diseases, but by husbands, wives, brothers and sisters, and by children. What impresses me most about those stories, including yours, is the courage of so many to continue to go forward, even in the face of the possibility that healing may never come.

Our first speaker in Sacrament Meeting yesterday talked about caring for her only brother with cystic fibrosis. When she described his dying in her arms at age 28, three years after a lung transplant, I was speechless. When she described the feeling of comfort she recieved as a matter of prayer, most of the congregation was crying. If I were the bishop, I would have had the closing prayer right then and sent everybody home.

I hope you can continue to find the strength and courage to continue. Sometimes, like the sister in our ward, the only healing there really is is a matter of strength and comfort that God loves you in spite of, and often because of, your daily challenges.

Jonathan Green on April 22, 2008 at 3:52 am

Patricia, I’m terribly sorry, but you have absolutely no way of knowing if you contracted CMV from watching the girl in your story. It’s possible, but only that. Because, as you say, the germ is so tenacious, you could have picked it up anywhere.

Lora on April 22, 2008 at 9:38 am

While it could be argued that without absolute gradient tube measuring of the medical facts to prove who infected who where and when, Patricia is making another point as well, here, and I would like to illustrate by a short experience of my own:
My daughter contracted rheumatic fever which attacked her brain and heart. It started with strep. The doctors suggested that we were to somehow avoid strep in this world, in a public school setting and with regular church attendance and a husband working a job just as we do in this life. Bit of a challenge, I assure you. Rest assured, we have been making changes.
One day a friend of mine whose daughter is the same age as mine stopped by and the girls played. I heard hers coughing and struggling for air. I expressed concern that came from many different corners of my psyche. Her response? “Oh, she’s got strep,” in this amazingly off hand way. She KNOWS we avoid strep. She KNOWS strep led to the first infection, and that we were to stay away from it. She simply has a very different attitude towards germs and infecting others and human relations than what I have. And that’s part of what Patty is saying.
I think she’s holding up for our examination our cavalier attitudes concerning our bodies and those around us.
As for absolutely no way of knowing…how can one prove that she can not know this series of incidents were directly related?

I don’t think Patricia’s post hinges on whether or not her babysitting stint resulted in her daughter’s brain damage. And I don’t think she’s trying to excuse herself, answer the question “why me?”, or present herself as heroic.

She’s showing the fallacy of the tidy equations we set up for ourselves for the sake of comfort.

And Julie, I believe your reply to your grieving friend was one of those, albeit offered with the best of intentions.

As many of you know, I have a son with Down syndrome. His diagnosis shattered my paradigm just like Patricia describes. I do believe that God can and sometimes does cause specific events in our lives, but I believe those occasions are the exception rather than the rule. Think about it–did God hand-pick the egg that my ovary released the month my son was conceived? Before that, did he send some spirit-driven scalpel to divide its cells in an atypical way?

Those are rhetorical questions, of course. I can’t possibly do the subject justice in a post–in fact, I’m writing a book-length memoir about it. But consider the implications of believing God micromanaged Patricia’s daughter’s illness. Do we really believe he foreordained Patricia to come into contact with CMV? Did the spirit guide her to the time and place where she contracted the virus?

I don’t believe so. But the only acceptable explanation any of us can give to people in such situations, after stating our personal opinion/belief, is I DON’T KNOW. And in any case, the extent of God’s involvement in the dynamics here does not in any way change the consequences.

Let’s focus on the meat of this post (and Patricia, if I’m misunderstanding, please correct me): the experience of having your model for understanding and living life (and God) blown to pieces.

Ugly Mahana on April 22, 2008 at 10:37 am

I love the verses in Daniel 3:17-18. Nebuchadnezzar ordered three Israelites into a furnace as punishment for their refusal to worship an idol. The Israelites stated that God could deliver them, but that, even if God did not, the Israelites would still refuse to compromise their faith. (See the verses for a more poetic rendering.) Patricia’s affirmation that, in her and her family’s struggle, she has “see[n] the face of God” reminds me of the faith of affirmed by Shadrach, Meshach, and Abednego.

Patricia Karamesines on April 22, 2008 at 10:44 am

Jonathan’s comment is of course not showing. It’s a good question and doesn’t disturb me. Would somebody in the T&S admin please let it back in the conversation?

I’ve already been where that question is, over and over. I have reasons for being here now.

Frank McIntyre on April 22, 2008 at 10:55 am

PGK,

I found JG’s comment in the mod queue and put it back. Have at it!

Patricia Karamesines on April 22, 2008 at 11:03 am

Thanks, Frank. I’ve already “had at it” in the post beginning with the phrase, “The probably vector” and my deliberate and deeply considered choice to portray my reactions to the coincidence of my phone call with my friend and the family’s passing by the window at exactly that moment in the conversation. That’s enough to put into addressing the question, though of course, and I hope, people will address it in their own thinking.

PGK: Thanks for putting this up. I look forward to reading the rest of it…

Kristine on April 22, 2008 at 11:12 am

I wonder if perhaps Christ’s plea to his Father to “forgive them, for they know not what they do” was his last because it is the most difficult kind of forgiveness–forgiveness of harm caused ignorantly, though not innocently. How do we forgive when there can be no catharsis of righteous anger? When the one who has wounded us doesn’t even see the wound, doesn’t ask forgiveness and would be puzzled (and even hurt) by its being proffered? This kind of forgiveness requires a broad charity for human nature in a fallen world that is in some ways far more difficult than the kind of forgiveness we offer to a penitent offender we can look in the face.

mel on April 22, 2008 at 11:17 am

Thank you for your story, I have a bittersweet connection to April 22nd as well and your post has definitely stirred me.

It is so difficult to be able to pinpoint a specific act, particularly when it was done with the best of intentions and against your first instinct, that could have altered your life.

Today I should be celebrating the 5th birthday of a baby girl I lost after 6 months of pregnancy, and in hind-sight there were a few signs and a specific event, which was done with the most charitable intentions on my part, that probably would have prevented her death and changed so much about my life. But I’d been told by doctors and in an answer to a very earnest prayer – that I should not worry, and I trusted.

Now I worry about everything. And it’s not good. There is only so much we can prevent, and even with extreme vigilance, life happens. I now have a son with a serious peanut allergy, and despite our best efforts to read every label and control everything that enters his mouth, he still has anaphylactic episodes where we must give him an epi-pen. Then we go back and try to figure out where we went wrong – did the person at Ikea touch a peanut butter sandwich before giving our son a hot dog? Was there a peanut butter cookie in the same case as the sugar cookie we bought him? Should I make everything from scratch to know for certain whether it’s tainted? It’s torture and overwhelming to know that the very life of our son can be determined by something I fed him.

Still, I so relate to your final thought – that one charitable act can let us see a face of God we didn’t learn about in Primary. Does a loving Heavenly Father let your child suffer or die because of your ignorance or good intentions? I have friends who tell their children in trying times, “Has God ever let us down?” but that question doesn’t provide much peace to me.

I try to focus on the other face of God, on the blessings and wonder of my life. I have to believe that it is all bigger than me, than the doctor I chose for that pregnancy or the seemingly inconsequential acts of my life. But I guess if I really believed, I wouldn’t worry so much. And so I still struggle – where exactly is the line between prudence and OCD, or between vigilance and faith?

Keryn on April 22, 2008 at 11:38 am

Thank you for sharing this, Patricia. Reading your post, and all the comments, brought so many thoughts to my mind that I can’t write any of them down. I really look forward to hearing the rest of your family’s story.

CS Eric on April 22, 2008 at 11:44 am

KLS (#9),

I don’t think Patricia wrote the post to present herself as heroic, anymore than you think of yourself as heroic. Yet, in some ways, she can’t help but. She writes that there are “remarkable stories,” and from what I’ve read in the post, hers is one. She writes that her paradigm has been wrecked, but I don’t sense that her life is controlled by bitter or angry feelings about that wrecked paradigm. She does what she has to do every day, just like you do with your Down’s child. She talks of miracles, including seeing children’s “courage and strength in the face of terrible odds.” Sometimes the dragons we fight aren’t demons or dragons at all; sometimes they are just insurance companies who are more interested in saving pennies than saving lives. It is fending off collection agencies while you file one more appeal to the insurance company to cover a medicine or procedure that they denied just because they can.

I wrote of a sister in our ward who found comfort in her Savior through her struggles. I still haven’t found that comfort in mine, but that doesn’t mean I can’t or won’t wish that others can find that comfort. I suspect that Patricia has found it, at least in some measure. If not, I don’t think she could have written this post with so much grace.

Let me make one practical observation, and then offer my personal emotional response.

As noted above, if there is no reliable vaccine for this virus, it seems advisable for women (and men for that matter) to ensure they are exposed to it in their healthy youth, before they become pregnant. It may not have been difficult to do that when we grew up in larger families, but it may not be a bad idea for teenage girls to spend some time babysitting and for young adults to spend some time in the nursery at church in order to experience the virus and build an immunity to it. It would be the same clumsy but often effective way that milkmaids acquired cowpox but were immunized by it against smallpox, and which gave Edward Jenner his idea for vaccination. My second son and his wife tell me that, before they had their own children, it was the automatic reaction of the bishop of every ward they moved into to ask them to work in the nursery. After the first couple of times, they decided to resist this act of episcopal desperation, but I wonder if it was not, in fact, in their best interest. They have two healthy children now.

Now my personal response.

Our first child was born six weeks early. At a time (1973) when care for premature infants was still primitive, he spent a month in an incubator on oxygen (being born at the Air Force Academy (7000 feet altitude) and then airlifted to a neonatal intensive care unit in Denver (5000 feet altitude) didn’t help) before we were able to bring him home on Christmas Day. He later became an Army combat nurse (like the ones who ailifted him) and a pediatric home care nurse.

My wife’s second pregnancy was twin girls. She went into labor two months early during a bout with bronchitis, was on bed rest for a month, and then gave birth. Karen died after a week. Julie was a month old and in preparation for transfer to a normal hospital in Colorado Springs when they discovered her intestine was dying. Emergency surgery was unsuccessful.

Surgery helped to forestall delivery for our last two children, so they were close to full term when delivered by C-section. We suspected that the weakness of my wife’s internal tissues was related to her father’s abdominal tissue problems.

When our daughter started having children, she seemed to have similar problems, losing her second child to premature birth. She was on bed rest for the end of the next two pregnancies. Fortunately, the problem seems to have resolved by itself since then.

I only bring this up to note that, as we went through these things, we learned how many of our fellow ward members had also lost children to premature birth, illnesses or terrible accidents, some of them due to careless adults. Though we don’t have the terrible infant mortality rates of two centuries ago, like those experienced by Emma and Joseph Smith, there are still a large number of families with children afflicted innocently by some of the worst things that can happen to human beings. When my wife was in the hospital for a month trying to forestall the birth of the twins, our ward cared for our son so I could keep my job and travel up and see her every other day. When the twins died, they helped us find doll clothing to dress them in for their burials. So one of the things that these experiences should bring to us is gratitude for the love and kindness of those who help us, and empathy and care for those who are in need of such love.

One thing that I remember when I think about these things is one of the few movies about the care of a family member who has been severely disabled, “Marvin’s Room”. One sister has sacrificed her life to care for their bedridden and largely uncommunicative parent, while the other comes home with her alienated son. Toward the end, the caregiving sister exclaims, “Oh, there is so much love!” and we then understand that she is overwhelmed, not by a love she thinks she is getting from her father, but by the love she feels when she is caring for him.

Patricia, thanks for this post. It’s helped me more than you can know.

Patricia Karamesines on April 22, 2008 at 11:10 pm

Well, Mattea’s birthday party is over, she’s had about as much commotion as she can stand. Mattea’s little sister made her a chocolate cake (that Mattea can’t eat but the rest of us can, and M. enjoys us singing “Happy Birthday” to her while we bring in the cake and she likes us helping her blow out the candles). She’s hard to buy for, but for her presents we got her The Essential Donovan, Head to Toe With Elmo, and two mylar Happy Birthday balloons, one of which remains attached to her wrist so she can jerk and bounce it. The Essential Donovan is a big hit. The Elmo vid — she likes the one with telephones on it better. I picked her up and danced with her to “Mellow Yellow” and “Sunshine Superman.”

Back to this post. Thanks, folks, for your encouragement. And I’m very grateful some of you shared bits of your own stories. I know they’re just bits, because these kinds of stories are sooo big. Anybody who’s already commented who might feel the desire to add more, please do. Anyone else who has a story they would like to show parts of, please, please, you can here, I (and maybe others) need to hear them.

Kristine, your comment followed me out onto the cliff this a.m. when I went to hang with the swallows, swifts, and eagles for a private Earth Day celebration. Your insightful invoking of the “Father, forgive them, for they know not what they do” moment in the scriptures raised to mind another model Christ offers for doing the needful thing: leaving the ninety and nine to go after the lost one. Nowadays, that’s not an economical model. Maybe it wasn’t back in Christ’s time, either. But it’s the productive, creative, epic model. Epic isn’t economical either. Insurance companies, as CS Eric points out, won’t pay for “epic.” It’s the Christian expedient, the action contrived to meet the depths of the need.

mel: Thank you for reminding us that molecules count. I’ll be more aware of the realities of peanut allergies now and be more careful myself. We keep up a similar vigilence in our household for illnesses that pose special threats to Mattea, so I get the worry (exhausting!) and the OCD concern. And I agree, I think it is all bigger than us — and I like that, I’m grateful for how raising Mattea has defined the frontier of who I am so I know which way to push into. People who live with mortal crises, if they are to have any chance at all, either for resolution or redemption, learn, I think, to cross that frontier to look for what they need, to get beyond and over themselves.

Raymond touches on two elixirs for our culture where these hard matters are concerned: kindness and love. I read a mystery novel once, pretty bad in most ways, but it contained one good line. That line expressed the belief that kindness is one of the highest forms of intelligence. Having been through sixteen years of uncertainty, desperation, vulnerability, etc., I’m here to say that it’s true. Whenever someone showed me genuine kindness, it solved my Rubiks cubes of anxiety, confusion, and loss. Also, genuine kindness had a powerful effect on Mattea, enabling her to test new ground without having to deal with hair triggers on old defense mechanisms.

As for love … well. I’m actually getting to that.

Patricia Karamesines on April 22, 2008 at 11:48 pm

BTW, I’m surprised nobody has said, “You’re telling me that on Earth Day, you had a baby, the two hemispheres of whose globe had been ravaged by a predatory organism? Come on, that is sooo over the top!”

It is over the top, it is totally over the top. Yet there it is. And speaking of coincidences, the friend I report calling when I needed advice? The one whose son had Fanconi aplastic anemia? She happened to call when I was writing the post. She calls every two or three months, but this call was especially timely and important because I needed her help writing this. I was able to ask, “Did you feel like you were living an underground life?” “Is this the way the way you remember it happening?” etc. We talked for two hours. She understood when I said writing this post disturbed me and my husband, too, when I read it to him. At the end, we expressed our gratitude for the remarkable eight or ten months we spent together in Tucson. I had gone down there for grad school w/out arranging for a place to live, everything I owned in my ’67 station wagon (half of which worldly goods melted in the Arizona sun) and my Siberian husky. I bought a paper and circled her ad for a renter. I dropped some quarters into a pay phone and called. She accepted me and my dog.

Her son, Travis, who had the FAA, was eight at the time, small for his size but a fireball. Little did I know that when I got the studio apartment, I got Travis, too. He boobytrapped my porch. He kicked my door, demanding I let him in. Once, after listening to half an hour of pounding while I was trying to study, I opened the door and threw water on him. He stood there, a look of surprise on his face, which was followed quickly by a look of delight. He used to climb up on my back and lay there while I played solitare Scrabble. He raided my fridge and drank up my fruit punch. I couldn’t believe how much life was in that boy for all he had been through and I wound up loving him deeply. I consider those months I spent living with Marilyn and Travis an apprenticeship that prepared me to roll up my sleeves when Mattea was born and find out what was what. This last time we talked, she and I wept at the miracle of God giving us to each other. And the miracle of giving us Travis.

Travis died a few years back on my youngest daughter’s birthday. Cirrhosis from that hep C he contracted from the transfusion, combined with a doctor’s poor judgment.

One day I played freeze tag in the park with Travis and his little sister. I’d frozen the sister and was hovering over her, making it difficult for Travis to reach her to unfreeze her without getting tagged himself. “You can’t guard angels!” he said. It was a phrase I’d never heard before. It felt then like a title of a poem or the moral to a story.

Meanwhile, those who ran you off the road motor on their way, completely unaware and unaffected, their futures smooth and undisturbed by the already forgotten episode.

I’ve had friends who lost a child to RSV and have another that is seriously disabled by it. Just after I met them someone brought a child with a raging case of RSV into the nursery where Rachel was.

the fallacy of the tidy equations we set up for ourselves for the sake of comfort aside, I did not risk Rachel, having already experienced too much risk.

Though we donâ€™t have the terrible infant mortality rates of two centuries ago, like those experienced by Emma and Joseph Smith, there are still a large number of families with children afflicted innocently by some of the worst things that can happen to human beings.

About a year and a half ago I decided to enroll my preschool-aged daughter in gymnastics. I had the choice of two gyms, one very close to our house and one a fifteen-minute drive away. After visiting both, I went to sign her up at the close gym. As I waited in the office I had a really bad feeling so I turned around and walked out and signed her up at the other gym. I assumed that the feeling was for my daughter’s benefit…you know, she would have broken an arm or something. I was wrong.

Fast-forward a few months. I’m now five months pregnant and have just been told a day or two before that our youngest son has hypoplastic left heart syndrome. It is one of the most complex and difficult-to-treat heart defects. It has only been treated for about twenty years. About half the parents with this prenatal diagnosis choose to abort the baby. Another percentage decline treatment and the baby dies shortly after birth. The development of the treatment is an amazing story, but is still relatively recent and one of those amazing conjunctions of science and medicine and pure art that requires a particularly talented surgeon and hospital team. If you choose the surgical option the baby needs to be born and treated at a major medical center and go through at least three open heart surgeries with all the risk that entails and who knows what long term prognosis to live life with half a heart. A little overwhelming.

Trying to cope with all the information, I got to gymnastics and sat down as the children started their routine. A little while later another mother sat down next to me. I’d talked to her briefly before since she is from the Eastern European country where my brother-in-law served his mission. She innocently asked me where the baby was going to be born. When I broke into tears at that question, she didn’t bat an eyelash but put her arm around me and probably handed me a tissue and asked questions and let me know that many mothers have such experiences and shared her experience with losing her daughter to one of the -encephalies.

About a week later my husband and I were going to drive down to the children’s hospital for an appointment. I knew that one of the other mothers at gymnastics had a daughter in some sort of treatment and was often at the hospital. I asked her for directions and parking information. (Her daughter has leukemia and just finished chemotherapy this past month.) She provided me with lots of information and over the next months taught me all the ropes for living at the hospital and dealing with doctors and we discussed living with long term fears and germ control for a medically sensitive child and all the other things that go with having a child with a long term diagnosis.

Between these two wonderful women and our regular visits every week at gymnastics, I made it through the next four months. It is hard for me to express what it means to have this experience and the tender mercy of having a support system ready and waiting for me when Danny was diagnosed.

The blessing hasn’t stopped either. Last week I was missing sleep over interacting with a friend whose son just died after his first surgery for the same condition as my son. As I agonized, I got a phone call from the second mother and we discussed what it means to have friends whose children have died from the condition that your own child is living with.

As I’m typing this story, a song came on iTunes that has the following line, “I thank the Lord that he did shine his light through you, that your life touched mine.” That sums up many of my thoughts about this experience.

Patricia Karamesines on April 23, 2008 at 12:23 pm

Thanks, Lora, for your birthday wishes for M.!

East Coast, thank you for your generosity. Maybe, if we light these warm lights, it will help reverse global cooling. ;)

I remember at times during my family’s ordeal seeing others receive blessings and wondering why we had been overlooked or left in the dark and cold. It turned out that I had to back up to take in the bigger picture, something that’s admittedly hard to do when you don’t know which way to turn or are overwhelmed with grief and loss (in this case, loss of the future my daughter and I might have had together, loss of my family’s secure future, and loss of my future overall however I’d imagined it — you know, famous writer, prof. at BYU, etc.). When I managed, I could see events that had happened or people who had come into my life that could help me find an opening, and I could see I needed to give life time. M. stabalized somewhat in condition when she was about six years old. Life is always precarious, but after six years we were in a better place. Good enough to have another baby, even though there was some risk that the CMV, which takes up permanent residence in your body, would flare up again and endanger a new pregnancy. Also, having both M. and a new baby would pin me down but good. But we had wanted more children. When M. was born and her troubles came to light, we didn’t know what it meant for bringing more kids into our household. What it meant for them, what it meant for us as parents and especially for me, whom the responsibility would pin down completely. When the time arrived, we took the leap.

I was 40 when I became pregnant again. We monitored this new pregnancy closely through ultrasound. When the tech announced the baby was a girl and that she appeared “vigorous,” I thought, “I am comforted.”

Yet after everything that’s happened, I’m aware that even this gift of a healthy daughter is not wholly given. Everything can change at any moment.

Before M. was born, I believed myself and my family safe in the gospel and in the culture I was born into. Now I see that part of the gospel’s power resides in the energy and means it provides for dealing with the fallout of our wielding of human agency within the matrix of unknowingness that encompasses us. Back when my future changed in the blink of an eye, I had to reimagine every single strand of meaning I’d woven into my tapestry of belief. Now I have a new tapestry, a better one. But even that one I stand at the ready to lay on the altar with my broken heart, should the necessity arise. Giving it up right away rather than trying to hang onto it even as it falls into tatters moves things along more quickly.

East Coast on April 23, 2008 at 1:04 pm

A few hours later I just read through my comment again and noticed that I had a real problem with the use of past and present tenses. I should clarify that this happened almost a year ago and that Dan is doing fine now in-between surgeries and is almost a year old.

I’m in awe of the way that you’ve been able to express some of the meaning and the search for meaning in your experience, Patricia. Having a child with a disability is such a complicated thing and strikes so deeply into the meaning of everything you’ve ever believed. I know that for awhile, faith words and religious language stopped having meaning. They were just noise. Eventually the words and experience of faith have come back but somehow in a different form.

One of the things that has helped me cope has been to pass along the gift that those two women gave me. As I’ve gotten to know other mothers expecting or raising heart babies, the discussion and listening and sharing fears and tears has been healing to my soul. Not in any simplistic way; it is also a very complicated experience.

Patricia Karamesines on April 23, 2008 at 4:36 pm

“I had a real problem with the use of past and present tenses …’

I get that, since whenever I open my mouth to talk about these things, I relive them.

I am always touched to read the words of those who share not only my faith, but have joined a club that none of us wanted to be a member of.

My oldest was diagnosed with autism shortly before his third birthday. For a long time the Lord and I were not on speaking terms. I have never been so angry and hurt in my life. I felt like you did Patricia – I did everything I was supposed to and still this happened. And this isn’t something you’re supposed to say in Sacrament or to your LDS friends. When my husband’s siblings were told, they went on about what a great miracle it was and how we were so blessed to have this, that God had honored us in some way. You’re not supposed to be upset. You’re supposed to have faith and understand the plan and get over it. No one wants to deal with your messiness.

What I came to believe is not that God micromanages – I don’t believe He caused my son’s autism, but that He knew it was going to happen. Heck, even I somehow knew at an early age that it would happen. As a teenager I discussed this difficult son I knew I would have. I knew there would be behavioral issues, I didn’t realize it would mean developmental as well. I never even considered the possibility.

And it felt even more ironic since I had grown up with a sister with severe mental retardation due to a genetic fluke. I felt as if I had already had this particular test and had no desire to go through it again.

Of course it is different as a parent, and my son’s condition is much different than my sister’s was.

I am looking forward to reading the rest of your story. Thank you for it.